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The Lived Experience Cafe chat

August/September Lived Experience Resource Exchange Advisory Conversations

August - September 2017 Resource Exchange Summaries

Summaries Resource Exchange:

Who? 

This Lived Experience Resource Exchange for August and September 2017 is a summary of face to face conversations and one SE Ontario live (typed) chat conversation. These conversations involved input from seventy-three people from across all of South Eastern Ontario. Sixty two people were spouses, adult children, family or friends and eleven people were older adults living with a dementia, mental health or other neurological disorders. 

How?

Advisory conversations in August and September 2017 happened through phone calls, face to face meetings, one Province-wide Lived Experience Café themed live chat and one SE Ontario Lived Experience Café live chat that took place on www.dementiacrossroads.ca . Participants were invited to share their input – not as a complaints department – but from the view of making things better.

August and September Resource Exchange – SE Ontario Lived Experience Network 

August- September 2017 Face to Face Advisory Conversation Summaries:

Supports That Helped:

  • Family Care Partner found the SMILE program a great support; they also receive 8 meals a month that really help. Adult Day was very helpful at one point; however they came to the place where they could not manage his responsive behaviours. “I did not feel some of the staff and volunteers had the education they needed to deal with his dementia i.e. how to redirect him and communicate with him.”
  • One participant shared of a successful situation where her spouse experienced responsive behaviours that led him to be charged by the police. (This was an extremely stressful situation for this family). He spent some time in the BSTU and was able to return to a different Long Term Care Home. His meds and approach was altered and things have improved as a result.
  • There were several examples where people felt they had received the care and response they needed in order to keep their spouse/parent in the home. Many reported they had been given enough help and that it was timely.
  • Participants talked about the importance of staying active and busy, both as caregivers and especially as widows or widowers. They spoke of the importance of the Alzheimer Society memory cafes and support groups as well as Seniors Club programs and church activities to keep them mentally and physically enriched.
  • Participants emphasized the importance of a supportive, educated and collaborative family doctor when it comes to good outcomes, referrals and ongoing success in living with dementia.
  • Participants spoke about the value of music programs, both live music and IPOD programs. Music improved their mood, their thinking and brought joy to their lives. They felt this was definitely an area that should be supported with funding.
  • Care partners reported being very happy and supported by the psychogeriatric psychiatrist and the team. “They have been wonderful and made all the difference in this being more manageable.”
  • One Spouse talked about how helpful she found the education and support she received from the Alzheimer Society – especially The Changing Melody Workshop. The peer support from her Alzheimer Society support group and church supports are what helped her through her journey.
  • Spouse reported that despite a career as a palliative care manager and bereavement counsellor when it came to having to face her husband’s dementia, she felt completely side swiped and unable to cope. The help of her family members were essential. She also found good support in the Adult Day and Night Programs in her area. “This has been my life line.” Her husband attends Adult Day three times a week and she has access to affordable and excellent transportation to take him there. “Both the program and the transportation is quite affordable and user friendly.” She also has a PSW come in three times a week to shower her husband. “He refused to have someone care for him until they were able to send a male and most of the time a consistent face he likes. Without this consistency and making room for finding the right fit for him, this just wouldn’t have worked. We are hanging on by a thread sometimes, but these are the things that keep us from falling.”
  • “The three days a week I get of PSW respite is a godsend. Those four hours to leave the house – even if I do nothing – are the best medicine I could ask for. They are what are keeping me going.”
  • “CCAC was very helpful for us, they got things to make our house safer and gave us some support and help.”
  • Person living with dementia in the early stages and his wife reported that the local Alzheimer Society had held an Education Series – four weeks of education that was extremely helpful and on a variety of topics both information about the disease and practical hands on training.
  • “Our family doctor was very knowledgeable, proactive and collaborative. How “informed” your doctor is and how willing he is to reach out for you is the key to getting help early on. We were very lucky. Not everyone we know was this fortunate.”
  • “The saving grace for me was the support groups. If I had not had them, I think I would have gone around the bend because I realized A. I wasn’t the only one and B. There were people that really do care.”
  • “The Adult Day Program is a relief for me as a person living with dementia, I wasn’t keen to start the program when it started –but it is a place where I am comfortable in. We’re all in the same boat and no one is going to have a fit if I can’t remember their name, or say something stupid or babble on. I feel safe there. I find I am going out less to other things because I embarrass myself. NO one judges you there. The girls are wonderful people and there is a variety of stuff to do.”
  • “I didn’t want to go and now look forward to the Adult Day program and I am tired when I get home.”
  • The Blue umbrella program was listed as a positive project that will help make life easier for people living in the community. “If I could live in the community and had just a little more support to take a bus, go shopping or help at the bank, it would make a huge difference in my life and independence.”

Challenges:

  • “I have a background in social services and I was still having trouble finding my way and opening doors. Sometimes you just feel like you are in the mud spinning your wheels and it is so very frustrating.”
  • “There is still a great need for dementia education. We pretty much had to educate our own family doctor. She didn’t even know that an Alzheimer Society existed in this area. I knew about some of the services because I knew people who were going to things, but had I not known that we would have been fumbling around a lot longer with this referral to mental health services.”
  • “There needs to be more work around behavioural supports and training. In our society, when in doubt take a pill.”
  • “It’s not easy for either the person living with it or the care partner. I’ve come to the conclusion that once you start down the dementia road, it is your whole life. It takes over your whole life. It is a totally different disease. I have a liver disease and I can leave that and live my life but you can’t ever leave or not think about the Alzheimer’s. It is 24/7 and all encompassing.”
  • Spouses highlighted navigating the system, knowing who to call and what services as a real issue.
  • “There needs to be some kind of supportive assisted housing that is affordable. I would love to share an apartment with my husband somewhere where there was a little help right down the hall but not completely “long term care”. Retirement homes are beautiful but so outrageously expensive and aren’t geared to people living with dementia. This will be our tipping point.”
  • “At first you just didn’t know where to turn or what to do and now it has all happened so fast that I feel like there are almost too many people involved. It is just mind boggling.”
  • “I didn’t think I had anything wrong with me. I went to the doctor and the biggest mistake I ever did was saying, I think I am getting forgetful. The next thing I know I am at a memory test and this test and that test and we’re all sitting around a big table like this and there were five health care professionals there. A sweet heart of a specialist doctor at one end of the table tells me that I have dementia. It was like…I am a cancer survivor…and it was worse than that. I still feel like it’s written on my forehead and I am very angry…still.”
  • “Even though I have dementia and need support, I am young. I don’t want to eat, sleep and live dementia 24/7. I enjoy community support programs for seniors that are open and economical. They provide strength and balance exercises and other activities and outings that help keep me active but don’t just swallow me up into everything Alzheimer’s.”
  • “One issue for people is if they are smokers, they can’t smoke in programs. This really complicates care for us. It is simple to just say well they shouldn’t be smoking anyways, but it is obviously not that simple.”
  • Spouse highlighted the need for greater dementia education for PSW’s and hospital staff. They also talked about the lack of consistency in PSW staff and schedules for home care. “You can’t just send in new people all the time. There has to be some consistency to build relationships and trust and a schedule.”
  • Spouse shared the importance of affordable and accessible respite – that includes weeknights or weekends.
  • Spouse reported getting good supports for his wife in the home – help with a shower. “We are getting help but we need more help and it seems to have to chase to get the supports that you get.” The person also noted that there was a lack of follow through with some of the things discussed with his family health team and N.P. Plans are made but there is no follow up. This can be discouraging.”
  • Participants expressed that it was difficult to find out information about resources in the area and how you access them. Some members of the group had family members in Adult Day and Evening Programs or were benefitting from memory clinics while others from the same community did not know what helps existed or how to access them.” (Navigating the system.)
  • Family Care partner found the price of Life Line fall alert quiet costly at $60.00 a month. Others recommended another option that costs $29.00 a month. These supports, though helpful, can be difficult to afford.
  • Due to a shortage of long term care, one family care partner has a spouse in retirement home while they await a bed. This is a very stressful situation since the retirement home is not designed or equipped to manage the spouse who refuses personal care from anyone but family. They are driving a fair distance every day to provide support and this is causing great caregiver fatigue. Retirement homes are ending up with more and more people due to lack of respite beds and long waits for LTC.
  • One Spouse shared their need for more support and respite in the evening when sun downing is happening. They are awake most of the night and very tired and burning out.
  • Two families reported that although things had been good up to that point, that recently when they reached out for more home supports they were disappointed to find when they asked for meetings to have their needs “re-assessed”, coordinators conducted these interviews over the phone with the person living with dementia and did not speak with the family caregiver. Families were very concerned and felt their situations were not accurately evaluated. They also said getting physical help – lawn cutting, snow shovelling, house cleaning and other such supports are “the hardest to get.” “I just get so tired and feel like I’m all on my own. It’s more than just bathing I need help with.”
  • Woman living with dementia and her husband found the process of being tested very long, frightening and overwhelming. There were multiple medical professionals providing the testing, they weren’t sure who was responsible for what and what was going on. The participant felt rushed and that there was a lack of empathy and concern shown to her during the process. They referred to it as “a nightmare of an experience” and just re-telling it brought tears to their eyes.
  • Participants shared the frustration of being told different things by the same organization whether it is about whether they qualify for certain supports or not or when receiving hospital care. This communication gap leads to great anxiety for the family members and adds to the difficulty in navigating care. This lack of communication adds to the tipping point for many families who “just can’t trust that help is really on the way.”
  • Many participants expressed their biggest source of anxiety and stress was around the issue of their spouse or parent being sent home from hospital when the caregiver did not feel the person was well enough or that they were in a position to adequately care of them. It has been expressed that the stress and lack of resources experienced by hospital organizations is passed on to the person being hospitalized and their family care partners. Words like “hostility” and “bullying” are regularly used. Participants also do not feel confident or trust that sufficient, ongoing and consistent home care services will be provided to them. “We’re fighting to keep them there and they are fighting to get them out and the word “fight” is not an exaggeration at all. Something has to change for everyone’s sake.”

 

September SE Ontario Live Chat Summary:

What was the question?

September’s chat question comes from the South East Local Health Integration Network. Jennifer Payton-Hayward, Director of Sub Region Planning & Integration Rural Hastings, asks:

  1. “What supports would family/caregivers feel they required in order to sustain their loved ones to stay in their homes longer?
  2. What was or would the “tipping point” be that meant you can no longer manage caring for them at home?

What were the answers?

 Key Findings:

  1. Sufficient Home Care supports that are: a. flexible and based on the person’s individual needs b. provided consistently with consistent and compatible staff and c. practical help as well as physical supports.
  • “In home support by professional care givers - Assistance in doing transfers to/from bed and personal care.”
  • “Supports needed: - #1 and the MOST IMPORTANT is funding for Homecare services.”
  • “I’m an outreach worker (non for profit) and currently do check ins on a woman that suffers with mental illness. I’ve taken time to build a relationship with her. I don’t have a time limit on my visits. I think this is very beneficial for her and myself. This open time frame allows me to chat with her and report on what her mood was like, her demeanor, body language etc. We need more one to ones that aren’t rushed, but meaningful.”
  • “Logistics need to be improved so there can be stronger teams and to improve on scheduling and travel.”
  • “Inconsistencies with scheduling, PSW tardiness – often due to over booking and lack of travel time – are all large challenges to work on.”
  • “We are lucky from our side that we have it set up that we always have the same trusted PSW to come in. It provides consistency for the PSW and also for the family. If the PSW will be away, I don’t have the send someone to replace her for a day or two. The reason being, I still need to be there to show the new PSW how to handle my Dad and it isn’t really worth my time teaching someone for a day or two.”
  • “My son works as a PSW in the area, he is sometimes scheduled to be at a client’s home for one hour and following another hour at the next clients without being given and travelling time in between.”
  • “Often when home supports exist they are not consistent in either staff or schedule. More respite hours are needed. I think that hours not used one month should be available to bank and use later on when needed. I personally had much difficulty with the provider of my husband’s PSW’s getting it our schedule right. SO bad that I had to email my requests so I had a reference copy. Their scheduling is in dire need of improvement. PSWs are generally late. It would seem due to overbooking and not allowing for any travel time between clients.”
  • “In our case his spouse was very unwilling to admit that she was unable to care for him much longer which is not uncommon. However as the person co-ordinating with the agencies for his care I had a different view of the situation. My parents lived in the country and my mother could not drive so we had to do all the driving for groceries and appointments for both of them. I found that the hours he was entitled to were very limited and I had a lot for him. (8 hrs respite per week, 4hrs housekeeping bi-weekly, friendly visitor bi-weekly, and I took him out of the house 4 hrs weekly and bathing X2 weekly) so pretty much something every week day.”
  • “Assistance in doing transfers to/from bed and personal care are helpful.”
  • “Overnight respite and emergency people to call for when you are having a rough time would have really helped. Dad was up a lot at night wandering and his spouse could not rest as she would always hear him. So one thing is to have respite overnight worker that can help out at least one night per week would support caregivers. Also maybe an emergency system with on call workers that people could use if it has been a difficult week.”
  • “A consistent delivery system of common supplies would be helpful.”
  • “It would be nice if they could provide support to the caregiver in order to reduce the risk of burnout. That would include things like meal prep, house work, laundry, grocery shopping etc.”
  • “It used to be if you needed a small job done – your gutters cleaned out, raking up your leaves at the end of the summer or a small paint job you could call a handyman and you’d find an affordable trustworthy person you to come and help you out for a reasonable price. Now everything is done by companies and franchises specializing in one service and charging a lot of money to do it. We need an affordable handy man helper. This would be real respite for us.”
  • “I think there should be mandatory respite for caregivers. They often don't realize how deeply they are being affected....they need to get away somewhere else in addition to getting respite at home. So both ways, sometimes the caregiver leaves for respite and sometimes the patient does.”
  • “I hear some people say they desperately need to get out and away from their homes, others wish their spouses/parents had someone to take them out of the house so they could be at home in peace. Respite needs to be more flexible based on the need of the person not criteria or some kind of made up math formula or algarhythm.”

 

  1. Family care partner education that is both practical and hands on.
  • “Training is needed in really understanding the person you are caring for, their changing needs and skill sets to facilitate their safety and comfort (i.e. fear and anxiety).”
  • “Yes, I need education ABOUT Alzheimer’s – what is dementia, what is delirium, medication information and what to expect. All of that is important. But what is lacking is the hands on stuff…how to communicate more effectively without triggering them, how to redirect, how to handle them physically if they become aggressive. How do I help feed him, get him into a car walk with him and support and approach him in real tangible ways?”

 

  1. Financial support for aging in place technologies and supports.
  • “Time for respite, possibly financial supports to manage "dementia specific" challenges (i.e. wandering, assistive devices, etc.)”
  • “More Assistive Tools funding to increase safety and reduce dangers are needed.”
  • “Things like those extra couple of grab bars, funding programs for GPS devises, funding the cost of basic internet, providing a tablet or laptop can help, especially in the earlier stages but even later…i.e. wandering, music therapies etc”.
  • “The tech issue that is foremost for me is that patients files should be the same across all support and medical services and accessible for all those providing care.”
  • “If a person falls in the home, they will not have the strength to lift them back up. There could be patient lifts (hoyer lifts) in the home so the caregiver can handle this kind of crisis.”
  • “Help with medications, (CCAC agencies would were there to "prompt" medication vs monitor)”

 

  1. More help and support for those living with early onset dementia – those 65 years of age and under.
  • “Wow! First of all, we need to do a whole lot more for early onset dementia - getting specialized medical care is difficult because a lot is for "geriatric" defined as at least 65. Our loved ones have a geriatric disease but don't meet the criteria.”
  • “Fortunately I can still get out for short periods of time but it’s not fair to leave my wife at home alone while I'm out recharging. Any adult day program type services we have encountered are for those well along the spectrum and certainly aren't very stimulating/engaging for the younger person living with Alzheimer’s.”
  • “I had no difficulty with the physical care as my husband was a very healthy guy and to a certain extent still is. What we needed was more supports, services etc. for people who are younger and have early onset dementia.”
  • “Is it Psychogeriatric care if they are under 65?”
  • “Even though I have dementia and need support, I am young. I don’t want to eat, sleep and live dementia 24/7. I enjoy community support programs for seniors that are open and economical. They provide strength and balance exercises and other activities and outings that help keep me active but don’t just swallow me up into everything Alzheimer’s.”

 

  1. Improved access to Psychogeriatric and Behavioural Support Services both in the community and at home.
  • “I think (although others may not) that I could have kept my husband home longer if we had had the psychiatric care we needed and therefore the appropriate meds.”
  • “Collaboration around psycho geriatric treatment: My husband was hospitalized for pneumonia. Instead of simply treating the pneumonia, the admitting Doctor changed the medications that his geriatric/psychiatrist had prescribed which had his dementia under control. This has taken over three months to correct at my husband's expense!! This made it impossible to care for him at home thereby causing his admittance to a home in a crisis state, causing him to be placed somewhere other than our choice of homes.”
  • “I had tried several years ago to get access to mental health but as it appeared we were managing too well, my cries went unheard.”
  • “Our experience was a bit screwy, as we went to emergency and the on call doc suggested the wrong thing to do which delayed our access to other medications that might have helped. There should have been immediate communication with Mental Health services.”
  • “Intervention and constant reassessment of drugs to relieve anxiety, etc......it was much too slow in our case...I might have been able to keep him home a lot longer if this had been handled differently.”
  • “How about a team for specialized nurses who visit the home at least monthly to hear the challenges and trouble shoot before we get to crisis?”
  • “Geriatric Emergency Room nurses should be in every ER to flag patients for dementia and delirium!”
  • “Wouldn't it be great if there was a mobile BSO team for people in their homes?”

 

  1. Caregiver Supports including: a. counselling for caregiver stress, coping skills, managing family dynamics and grief offered by a consistent party throughout the different stages of the disease b. Peer to peer support and dementia support groups, subsidized recreational activities.
  • “As much as I’ve tried to rely on the “experts” within the system, it is many times that neighbours, friends and some family that I’ve reached out to that are open to understanding dementia challenges and pitch in But I need to reach out to them and ask.”
  • “We talk a lot about the need for staff to have more dementia training, but we caregivers need that education too. Often by the time we receive it – it is too late to act on it and we’re left knowing what we should have done or could have done if we’d only had some training.”
  • “I believe we need to learn how to "Spread the Stress" so that the burden is not left on just one caregiver or even two. The families that I've seen have less crisis are the ones that have 3 or more carers to 1 person with dementia close by.”
  • “I also think caregivers will need an outlet outside of the home just for themselves. Whether that's a support group, a hobby, a gym, a social club, or whatever... that needs to be part of the lifestyle to maintain the caregiver’s health and well-being.”
  • “I am part of an Alzheimer Society support group for men that I am finding very helpful.”
  • “The saving grace for me was the support groups. If I had not had them, I think I would have gone around the bend because I realized:  A. I wasn’t the only one and B. There were people that really do care.”
  •  “I'm not sure what the right structure is but now my only point of contact has been through the Alzheimer Society and they do a great job but I wonder how strong the link is between them and CCAC. Maybe CCAC needs to develop programming for diagnosis and support for early stage. They seem to get involved pretty far down the spectrum.”
  • “It’s not easy for either the person living with it or the care partner. I’ve come to the conclusion that once you start down the dementia road, it is your whole life. It takes over your whole life. It is a totally different disease. I have a liver disease and I can leave that and live my life but you can’t ever leave or not think about the Alzheimer’s. It is 24/7 and all encompassing.”
  • The Blue umbrella program was listed as a positive project that will help make life easier for people living in the community. “If I could live in the community and had just a little more support to take a bus, go shopping or help at the bank, it would make a huge difference in my life and independence.”
  • “Maybe we need to create a collaborative centre that includes all the partners who have a piece of the puzzle. That way we can get one stop answers to all our questions and needs. I mean it’s nice that my wife and I can drive to Toronto to see our neurologist but I'm sure not everyone is able to do that so what are they doing?”

 

  1. Earlier and Consistent engagement with health care support and coordination.
  • “One of the themes I'm hearing is that the system operates in REACTIVE mode versus PROACTIVE and PREVENTATIVE.”
  • “It feels like (and I could be wrong) that I am just filling out forms to give them enough information to keep the brakes on and say “See you are fine.””
  • “There’s a need for proactive and innovative programs and supports for early stage. Clearly what’s being done right now is not meeting the need.”
  • “I contacted CCAC to see if we should at least get on their radar. They said that if we didn't need anything at this point it wouldn't be worthwhile. I don't think you should have to wait until you are "in need" to get engaged with the system and learn some coping skills and ways of providing better care today.”
  • “The current system does not meet the needs of this very vulnerable group… we need more preventative care for people and their families living at home in the early stages…trouble is coming and is just on the horizon, not acting until there is a crisis actual creates the crisis.”
  • “Working in the private sector, the only thing that I've participated in and have witnessed is outreach work. And I mean REAL outreach. Not just sitting in a cubicle and saying "I do outreach". It all begins with building trusting relationships and doing regular check-ins and follow ups.”
  • “Checking in often (in person – not on the phone) is essential to be able to notice and signs of potential crisis before its active.”
  • “People in the early stages shouldn’t be sent away, ignored and have to wait for care when he calls and says” Hey, this is going on and let’s gets ahead of it now while we can. They should at least assign you a coordinator or care manager.”
  • “CCAC should not be allowed to send you away empty handed when you reach out to them. They are the first access to anything, even day program which is needed early on. If the need isn’t there yet….at least begin the conversations and start to set things up for when they are needed and send them to the resources and supports they need right now.”
  • In our current system we seem to have "heart clinics", "cancer clinics" etc. but we don't have a "denote clinic". In fact as far as I know the neurology department doesn't have anyone focussed on dementia (maybe that's not the case but if so I'd like to know about it).”
  • “The system needs to go beyond our current assessment methods.” (Two people reported that their assessments for whether or not their spouses need more care were recently conducted on the phone NOT in person and they were not included in the conversation.) “It needs to be more than just filling out forms and ticking boxes.”
  • “At first you just didn’t know where to turn or what to do and now it has all happened so fast that I feel like there are almost too many people involved. It is just mind boggling.”
  • “I have a background in social services and I was still having trouble finding my way and opening doors. Sometimes you just feel like you are in the mud spinning your wheels and it is so very frustrating.”

 

  1. Creative and affordable Supportive Living solutions for both the person living with dementia and their spouse/partner.
  • “In hind sight, I’m not sure if keeping them at home longer is what we need. I think we need affordable housing that individuals could be together much “like” a nursing home at night, but during the day the spouses could be there to look after their loved one as usual. Maybe something like Ronald Mac Donald House, but have ready-assistance if they need it.”
  • “I often wished that there was Assisted Living for my husband and I could be much more useful in his care, but would need to know that back up was right down the hall so to speak. This would have changed everything for us.”
  • “Even if you lived somewhere “normal” but there was some kind of emergency support to call when things were tough. I might have been able to handle things then.”
  • “There needs to be some kind of supportive assisted housing that is affordable. I would love to share an apartment with my husband somewhere where there was a little help right down the hall but not completely “long term care”. Retirement homes are beautiful but so outrageously expensive and aren’t geared to people living with dementia. This will be our tipping point.”

 

  1. Improved and mandatory dementia education for any staff person who provides support or health care to people living with dementia and their family care partners.
  • “Sadly, many staff who serve families living with dementia are less knowledgeable about the needs of the families going through the dementia.”
  • “When it comes to providing care, many need education to support younger people. They are designed and trained to support the frail and the elderly.”
  • “People who serve families living with any kind of cognitive impairment should be mandated to be knowledgeable about dementia.”
  • “Staff trained in all areas of dementia”
  • “There is still a great need for dementia education. We pretty much had to educate our own family doctor. She didn’t even know that an Alzheimer Society existed in this area. I knew about some of the services because I knew people who were going to things, but had I not known that we would have been fumbling around a lot longer with this referral to mental health services.”

 

  1. Access to Adult Day and Evening Programs and Respite.
  • “Access to Day Programs (without long lists and in settings other than Long Term Care), why are there not privatized Day programs?”
  • “When things became more stressful with my husband, then I was lucky enough that both children lie in the vicinity. That is not always possible. I was also fortunate enough to have some amazing friends that were there to give me that break. I don’t know what I would have done without them. What do people do when there is no one to give them that break?”
  • “Support for families during hospitalization is a huge gap.”
  • “The Adult Day Program is a relief for me as a person living with dementia, I wasn’t keen to start the program when it started –but it is a place where I am comfortable in. We’re all in the same boat and no one is going to have a fit if I can’t remember their name, or say something stupid or babble on. I feel safe there. I find I am going out less to other things because I embarrass myself. NO one judges you there. The girls are wonderful people and there is a variety of stuff to do.”
  • “I didn’t want to go and now look forward to the Adult Day program and I am tired when I get home.”

 

What was or would the “Tipping Point” be?  Key Findings:

  • “I was afraid of being hurt due to aggression and also just exhaustion.”
  • “The sense that I wasn’t being heard by the system care planners, that they really weren’t proactive or taking me seriously was a tipping point. I don’t think they were very astute about me beginning to fall apart no matter what I said or did. I would show up raving at the office in tears and all we would be was a bandaid.”
  • “Until there is a crisis episode, the system doesn’t kick in. Often by the time they do, it is too little and too late.”
  • “After 3 years we were all very tired. I can’t begin to imagine how tired my 88 year old mother was by the time admission came. One thing you have to remember is that the spouses are not trained in any type of mental health or nursing care so it is very difficult to win them over with different techniques that could change some of their spouse’s behavioural issues. They don’t truly understand the cause and effect of the behaviour and are also so tired they don’t have the energy to try some of the techniques we talk about. We had the added bonus of my Dad leaving the house or letting strangers in.”
  • “The tipping point for me was not enough support around responsive behaviours, medication, care and my lack of knowledge. Everything became too difficult to manage.”
  • “I think the tipping point is when the caregiver can no longer provide the support necessary to safely keep the person in the home. There may be many reasons for that e.g. caregiver burnout, aggressive behaviours, lack of support, the person becoming too physically demanding or wandering etc.”
  • “The behaviours were unrelentingly scary. He was terrified throughout the day. The physical care was not an issue it was supporting his anxiety and behaviours.”
  • “The tipping point for many families would be physical and mobility challenges that cannot be handled by one caregiver. An example would be the inability for the caregiver to move their loved one around from lying in bed to sitting on a couch or getting them to the bathroom.”
  • “My husband was hospitalized for pneumonia. Instead of simply treating the pneumonia, the admitting doctor changed his medication that the geriatric psychiatrist had prescribed and had his dementia (and behaviours) under control. This has taken over three months to correct at my husband’s expense! This made it impossible for me to care for him at home and thereby causing (the tipping point) his admittance to LTC (in crisis) and to be placed somewhere other than our choice of homes.”
  • “Another tipping point is when some caregivers have to decide on a career/livelihood versus caregiving in the home.” “I am witnessing my mother’s struggle right now. She’s had to take a leave from her job to take care of my step-father but won’t be able to do this over the long term.”
  • “I think often the tipping point is not really the tipping point at all. It is just sheer exhaustion, grief and despair that all get triggered – often by one or two events that send everything crashing to the ground.”
  • “There is often an “event” that prevents that caregiver from providing a safe environment at home. Sometimes a caregiver burns out, breaks a leg/hip, can’t get enough sleep etc.”
  • “A million little breaks lead up to one key event that becomes the tipping point.”
  • “I knew I wasn’t able to provide him the kind stimulation and support he needed. He needed a team and I just couldn’t meet all his needs anymore. I was so tired from trying.”
  • A common tipping point story is when the person goes to the hospital for a surgery, health crisis or injury. Although the family does not want to send their loved one to Long Term Care, the hospital is pressuring them to take the family member/friend home sooner than they feel physically or emotionally prepared for. People regularly use words like “bullied, intimidated and forced” to describe their experiences. This is a time when communication is most inconsistent and caregivers feel the most alone, misinformed and unsupported. At this point, families become completely overwhelmed and just walk away. Advisory members have suggested the need for a transitional supportive hospital wing or staffed short term respite-recovery location that patients could access and slow down the transition from hospital to home. This might help with this very emotional tipping point.

                      

This Summary was prepared by:

Sharon Osvald
Lived Experience Facilitator (South East & Behavioural Supports Ontario)

Providence Care Seniors Mental Health and Behavioural Support Services
in partnership with the Alzheimer Societies of S.E. Ontario & BSO Provincial Coordinating Office in partnership with brainXchange

www.dementiacrossroads.ca

Email: sosvald@alzking.com
Home office: 613-475-9943

Exchanging Knowledge, Partnering for Change

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